Living with MND/ALS (not dying)

My name is Mark Maddox and i am living with the terminal illness known as Motor Nuerone Disease.I am 39 years old,I am from Liverpool and i write like i speak, in scouse!, seeing as this is my first blog i will start at diagnosis and early symptoms.

Diagnosis.

I looked at the clock on the wall, it read 5.40pm. I had been sitting here for half an hour waiting to see Professor Davies who was a consultant at The Walton Neuro Centre in Liverpool.I was waiting for test results I had two weeks before. I knew I had MND, just knew, you know when you get that feeling and you just know? It’s now November 30th 2010.

In the summer of 2010 I made an appointment for the doctors because of muscle spasms I was having in both biceps and my shoulders it wasn’t of major concern but thought I best get it checked out also my hands, especially my right one was sore sometimes and when they were cold it was bad, they just wouldn’t work I was thinking I might have arthritis in them. I know my mates who are reading this are thinking hang on! Bicep twitches? Sore right hand? You’ll go blind Mads!! Anyway my appointment came and went after being told by a locum doctor “don’t worry about it you’re getting old”, and see if you can get some gloves to keep your hands warm!.(your no Quincy MD) So off I went thinking fuckin hell Mads you’re getting old mate. I was 37 at the time. A couple of weeks went by and my hands were becoming worse so I made another appointment with a doctor Pang, who would become a great help in my life. As soon as I entered Dr Pangs office I felt at ease with her, she asked what the problem was so I explained about my hands and my spasms in my arms and as soon as took my top off she looked at me and said “I’ve never seen nothing like that before.” I thought she meant my tattoos but unfortunately she meant my twitching, By now my arms were going crazy and it looked like hundreds of electrodes going through my hands and arms.” We need to get you a referral at the nuero centre in Walton.” Doctor Pang finished.

I’ll be honest with you here I didn’t really know much about Motor Neurone Disease apart from I thought old people got it. So as I left doctor Pang’s surgery I was still confused as to what was happening and now I just had to play a waiting game. After a couple of weeks I received a letter from Aintree hospital saying I had an appointment with doctor Davies so I attended and to be fair doctor Davies was a sound fella he was welsh and was into his footy and we started chatting about that which to me is a winner straightaway. So here I am stripped off on the table thinking please don’t go for the KY jelly and plastic gloves!! Luckily he never. He had a student nurse with him and began to examine my arms and shoulders asking various questions like how long have the fasciculation’s been occurring?, to which I replied “ya what”, to which his swift answer was “how long have they been twitching” with a smile on his face,so I told him a while now and he looked at my right hand noticing how skinny it was and if any of you have ever been to a physio or a doctor you get to that point where they start talking shop to their colleagues, like they start saying it could be the gluceomus approximus or the cardiovasculux of hemmeroiditis or sore legus of the broken ankleitis! And you just want to say hang on a minute speak fuckin English and not fuckin riddles! After examination and more shop talk with the nurse he suggested an MRI scan and an EMG test which obviously sounded serious (no shit Sherlock). So off home I went and again started searching the internet for answers, now the internet is probably the best invention ever. Its brought the world together, it makes us communicate at the touch of a button with people around the planet,and it also gives you answers to questions that mean fuck all! But trust me the internet is the worst thing ever when you’re looking for answers on MND it gives you worst case scenario so when you’re looking at TERMINAL and average life expectancy 2-5 YEARS, you start thinking shit I wish I never had a laptop now!

If you Google “muscle twitching in my arms” various things come up, mainly about anxiety and stress and anyone who knows me knows I’m pretty laid back and don’t let things get to me so I knew it wasnt to do with anything like that.Then there were websites for neurological symptoms like MS and MND!! And what was most intriguing was an image of an MND patients hand, the muscle part where thumb meets the finger had all but deteriorated and straight away it came to me I looked at my hand and it was exactly the same as the picture.

November 17th 2010

Day of my MRI and ECG tests.

I arrived at the hospital pretty much with an open mind, my appointment was 9.15am it was in the Jefferson day ward and I would be there all day. The staff were really good and patients were arriving with MS and up to now no one with MND which to me was a positive sign. Before I knew it I was in this MRI chamber with ear plugs in, a very loud buzzing noise and just my own thoughts that was the easy part. For anyone who has had an ECG test will tell you it’s fuckin hard work, you get four inch needles put in all over your body from your toes to your arms and belly to wait for it just under your chin, yes right under your chin and I’m telling you now that doctor that day nearly got a swift right hook off me when he decided to play Ker plunk on my face! Anyway pain over the nurse said I will receive my results in a couple of weeks, happy days I thought were finally getting there now.

The date was now 29th November and I hadn’t heard any news from the hospital and with us leaving for Germany in a couple of days due to my oldest son being involved in a European taekwondo tournament. I decided to give them a ring and see if they had any news, as I didn’t want to miss an appointment if I was away. I spoke to Doctor Davies secretary and I explained the situation regarding Germany and she told me the results had not come back yet and they would probably be here when I got back. That’s ok I thought just go and enjoy Germany. This was about 10 am and I was in work in Walton. At around 12.30 that day I had a phone call back off doctor Davies secretary saying the results had come back in and could I come in the next day at 5pm? I answered yes no problem and put the phone down. I knew then for definite I had MND. They weren’t calling me in to tell me I was fine and dandy! Now my mind was doing overtime people were talking to me in work and I couldn’t tell you what they said it just went over my head.

The next day went slow and it was time to go to the hospital and find out whether I was Donald ducked or not!

Doctor Davies came out of his office and came over to me and said “I’m sorry Mark were running a bit late I’ll be as quick as I can”. “No worries doc” I said which was my way of answering people most times. At 6pm he called me into his office and he was sat with a nurse alongside him he told me to take a seat, asked how I was? And I noticed how much he was looking at the floor, not in an ignorant way in a sort of embarrassed and later I realised sad way. I made him feel at ease and leaned forward and told him “its ok doc just tell me, I think I know what you’re going to say”. He looked at me and said” I’m really sorry Mark but you have MND” I put my hand out to him and he shook it I said “no worries doc shit happens mate” this wasn’t me trying to be a hard case this was me glad to finally hear what the fuck was going on in my body. I’m not the type go dramatic and say there was tears and tantrums everywhere and I ran out and screamed everywhere that I had MND I’m quite the opposite I’m a private person and my business is mine and my families. I told him about going to Germany in a couple of days which he advised me not to because of the state I might be in mentally and insurance wise. I told him there was no way I wasn’t going, I think he understood my seriousness because he just nodded and agreed.

And that was my symptoms and diagnosis story

i have decided to write a blog so people with MND/ALS can read it and hopefully take a positive from it and i will aslo be writing about other things that interest me ie Music football all sports and mainly a good laugh because lifes to short to be miserable and laughter is the best cure . Trust me

Shit what goes on Mark, but at least you can laugh (& make others laugh too) & hopefully your blog will help others to understand what you & millions like you go thru or will go thru over time… Take care n keep it coming… :0)

Wow – Mark- thanks for sharing this! You encourage me with your ‘voice’ and words! Your inspiration, strength and attitude are medicine to me. After 39 years living with HepC and refusing any treatment, I thought Maybe that would be my ‘ticket out of here’. Then the fibrosis/scarring reversed – which the docs shake their heads at and mutter, there’s no medical reason for this. Ha! Then, BAM…ALS! I though how will I handle this…I’ll shine, there’s no other way! Thanks for shinin’ on Mark!

Mark – you are & continue to be one of the most inspirational people I have ever met – your outlook is staggeringly brave – I hope we can all learn true human & humble spirit through yourself and this truly dreadful disease – Take Care mate & every best wish in the world – Dan the Manc

Hiya Mark, it’s Claire you have such a positive outlook, you are amazing to be thinking of others in your situation and in the thralls of other horrible diseases… Such an inspiration to be helping so many who need it

Words of inspiration to all…not just MND sufferers….they put my seemingly awful life worries into true context….please let Alty fans know when you update the blog and let us know how you are doing…we all love you at Alty Mad-Dog you are a true legend!! 🙂

Wow Mark…gosh your a Star…! So Many Talents…! Delighted to hear from you and that your continuing your Amazing Gift of touching others and passing on through being You , energy…inspiration and hope to So many people…Your amazing…and I still havent seen
you you play yet..! Keep us posted when you’ve got the next Gig sorted….L
oads of Love to You and Yours XX

Fantastic blog Mark. I guess that a lot of people steer clear of asking you about how you came to be diagnosed, so this is a superb way of sharing that experience, as awful as it must have been.Great idea to start blogging.

Hi Mark, from reading your blog and seeing you went to Dr Pang i would say you are Mark Maddox that grew up in Tuebrook. The lad who was so good at footy everyone my age (34 now) knew who you were and respected. Mainly in awe as you could play abit 🙂

Mark, you are an inspiration to people mate, I like that you are doing this and see it shows who you are. Someone who will put other people at ease by demonstrating the courage and determination so show people how this can affect a person. I am glad I can call you a friend and hope to get out for that pint when you want.

Just been having another little read of this mark, between you and josie you really do inspire us and I speak on behalf of annemarie too you amaze us all the time and watching my friend go through this with her beloved mum it warms my heart to see her so positive because she can now count on you as a friend as we all do. Right enugh now maddox 1 more thing seens iv been so nice any chance u can easy sunday please?! Haha what a man our friend mark maddox. X MNDFAMILY MNDFRIENDS X

Mark, this is Pauline, Dr Pang. I have read your blog and found out about it from a mutual friend Claire whose daughter is in the same class as mine. What a fantastic blog- straight from the heart telling your situation in such a true to form way in your own individual style. I was so touched about my mention by you. I can still remember the day you came and saw me. I knew there was something playing on your mind and when you were examined, I was struck by the muscle twitching ( and the tattoos!) Then I recall the letter from your consultant informing me of your diagnosis. It was a mixture of emotions…on one hand you had the answer to your symptoms but on the other hand I felt sadness as I knew how devoted you were to your beloved family and children and also to football not only as a player but as a coach and inspiration to the youngsters. Through all this time, I have been amazed at your fortitude and determination at not letting this condition defy you. Every time we meet, I gain invaluable travel tips and advice from your recollections of far flung destinations and it is so liberating to hear that you are taking every opportunity to achieve things beyond the imagination. Good on you Mark, continue to be an inspiration to us all and live life to the max every day.

Hi! I realize this is somewhat off-topic however I needed to ask.
Does running a well-established blog such as yours require a massive amount work?

I am completely new to writing a blog but I do write in my diary daily.
I’d like to start a blog so I will be able to share my experience
and feelings online. Please let me know if you
have any ideas or tips for brand new aspiring blog owners. Appreciate it!